One in three people with migraine said they frequently experienced migraine-related stigma, survey data showed.
Among nearly 60,000 people in the OVERCOME study, a web-based study of adults with active migraine, 31.7% said they experienced migraine-related stigma often or very often, reported Robert Shapiro, MD, PhD, of the University of Vermont in Burlington, in a presentation at the American Headache Society annual meeting.
Stigma was associated with increased disability, increased interictal burden, and poorer quality of life (QoL), he said.
“We identified two forms of stigma,” Shapiro pointed out: most commonly, the feeling that others minimize the burden of migraine (29%), followed by a sense that others perceive migraine is being used for secondary gain (15%).
“Stigma is a social phenomenon which is reflective of the discounting or discrediting of an individual who has a trait which deviates from social norms,” Shapiro observed.
“There’s increasing evidence that migraine-related stigma can significantly increase health outcomes, but there are no significant population-based data to give us an idea about how often these attitudes are felt by people with migraine and what those health outcomes are,” he added.
The findings came from 59,004 U.S. participants in the OVERCOME study from 2018-2020. Respondents met criteria for migraine based on a validated migraine screener that used International Classification of Headache Disorders (ICHD-3) criteria.
Stigma was assessed with the novel Migraine-Related Stigma (MiRS) questionnaire, 12-item question set developed by clinical experts from patient interviews. Exploratory factor analysis had identified two major themes important to understanding migraine stigma: secondary gain (how others perceive migraine is used — for example, to get out of commitments or to gain attention) and minimizing disease burden (perceptions by others that migraine is easily treatable, for instance).
In the study, disability was evaluated with the Migraine Disability Assessment (MIDAS) test, a measure of the effect of headache attacks on daily school, work, home, or social activities over 3 months. The Migraine Interictal Burden Scale-4 (MIBS-4) measured migraine burden between attacks over the previous 4 weeks, and the Migraine-Specific Quality of Life Role-Function Restrictive (MSQ-RFR) questionnaire evaluated the effect of migraine on social and work activities over the previous 4 weeks.
The study cohort had a mean age of about 41. Most participants were female (75%) and white (70%); most (89%) had episodic migraine.
Increased disability risk was significant for people who experienced migraine-related stigma. For people who perceived both types of stigma — secondary gain and minimizing burden — often or very often, disability risk was more than double (RR 2.68, 95% CI 2.56-2.80), compared with migraine patients who experienced no stigma.
Risk for increased interictal burden also was significant for people who experienced stigma, and was more than triple among migraine patients who perceived both types of stigma (RR 3.55, 95% CI 3.41-3.70) compared with those who experienced none.
For both disability and interictal burden, the highest estimated mean scores at every monthly headache day frequency were among people who experienced stigma. Similarly, people who experienced stigma had poorer QoL at every monthly headache day frequency.
One of the most striking findings was that people with fewer than 5 monthly headache days who experienced stigma had poorer migraine-related QoL scores than people with more than 25 monthly headache days who didn’t experience stigma, Shapiro noted.
“We believe migraine stigma is really an important area that deserves further research,” he said. “Certainly it has potential implications for clinical trials if migraine stigma is a major factor influencing the patient-reported outcomes we use.”
The OVERCOME study is supported by Eli Lilly.